Not the End

Death is one of those things that just isn't final. In some ways, it is. Carter is gone and we will never be together on this earth. That's pretty final. I will never see his little hair sticking up allo over when I get him out of bed. I will never get to know if he would be naughty or a momma's boy. But death is also ongoing. I can't just walk away and close the door on the fact that my son is gone. I still think about him every day. I wonder who he would be and what he would be like. I wonder if we made the right decisions for him. We deal with the effects of death every day.
The other day, we had to take our kitty into the vet. He had been limping and acting funny for a few days so we decided to take him in. I was practically in a panic before his appointment. I was convinced that they were going to tell us we had to put him to sleep and I knew I couldn't do it. I couldn't make that decision and I couldn't watch him die. It seems sort of silly, I mean I love Russell, but I don't always like him. And here I was, in tears over thinking that he wasn't going to make it. It took me right back to the day the boys were born. When we knew our babies were sick. We hoped and prayed we wouldn't have to make "the decision". And there we were, being told Carter was dying when moments earlier we had heard his little heart beating on the monitor. I couldn't bear the thought of having to make that decision again, even if it was just for our kitty.

Thankfully, it turns out Russell just got in a brawl with another cat while he was outside, he's on antibiotics and he will be fine. We can move on. But how do you move on when it's your child? Dealing with death isn't over and it has changed our lives. We will never be the same people we once were. Although it's hard and there are seemingly constant reminders of death and how it has affected our family, it's also a reminder. Death isn't final. Jesus has conquered death and it isn't the end. If it were the end, we wouldn't have the hope of seeing Carter again and that is one of the things that I cling to the most. The joy and hope of being reunited with my son. I can't wait.

"I tell you the truth, you will weep and mourn while the world rejoices. You will grieve, but your grief will turn to joy...So with you: Now is your time of grief, but I will see you again and you will rejoice, and no one will take away your joy." John 16:20&22

Chris Tomlin - I will Rise

There's a peace I've come to know
Though my heart and flesh may fail
There's an anchor for my soul
I can say "It is well"

Jesus has overcome
And the grave is overwhelmed
The victory is won
He is risen from the dead

And I will rise when He calls my name
No more sorrow, no more pain
I will rise on eagles' wings
Before my God fall on my knees
And rise
I will rise

There's a day that's drawing near
When this darkness breaks to light
And the shadows disappear
And my faith shall be my eyes

Jesus has overcome
And the grave is overwhelmed
The victory is won
He is risen from the dead

And I will rise when He calls my name
No more sorrow, no more pain
I will rise on eagles' wings
Before my God fall on my knees
And rise
I will rise

How To: NICU Care Packages

Since I have started talking about doing our second year of NICU Care Packages at Christmas, I have had several people ask me if they would mind if they "borrow/steal" the idea. I say, go right ahead!! I am definitely not the first person to deliver care packages and I'm not sure it's even my idea to steal. I've also had questions about how we go about getting everything set up, finding donations, and putting the packages together so I thought I would write a little post about it in case you are interested in doing something similar. The more the merrier, I think it is wonderful that so many people want to help out whether with our packages or with their own hospital. Here's our list of the things we are doing/have done to get everything ready:

1. Talk to the social worker/charge nurse at the NICU you are interested in donating to. I wanted to make sure that I wasn't breaking any hospital rules or that I wouldn't overwhelm staff by showing up with 40 care packages. I wanted to make sure if we were going to put the work into it that we went about it the right way to make sure they got to the families.

2. Decide what you want your packages to look like. To decide what we wanted in ours, I tried to think about the things I would have liked or wished I had while spending so much time in the NICU. Our list includes these things:

Small lotions (preferably unscented)
Chapstick
Small/Fun Size candy
Snacks (Instant Oatmeal, protein bars etc)
Small notebooks
Hot Chocolate
Hand Sanitizer
Preemie Baby hats (new, knit, crochet, or sewn in preemie sizes)
$5 Starbucks gift cards
Emergen-c/Halls Vitamin C drops
 Granola Bars
Pens
Kleenexes
Tea
Sample size shampoo/conditioner
Small children's books
A list of resources for NICU parents (websites, blogs, books, etc)

I wanted to include things for mom, as well as things that would help the parents bond with baby (books, clothes/hats for baby), which can be difficult in a NICU setting. We also included practical things like snacks and hand sanitizer.

3. Rally the troops. This is just not possible without the support of family, friends, and even strangers. Get organized and then put the word out there. You may be surprised at how many people want to help out. Use facebook, your blog, or email to share what you are doing. You could also involve church groups, Bible studies, girl scout troops, school classrooms, etc. Make your "wish list" easily accessible to people and consider making an Amazon list that people can either use as a guide or use directly to purchase and ship items right to you. You could even set up a specific facebook page for your volunteers so that you can show off donations and update people on needs/progress.

4. Have a place to gather and organize supplies. Things add up quickly and can get a little overwhelming as they come in. We keep most items in a separate box so that when it comes time to package up the items we can just grab one of each and put it in the bag.

5. Host a get together to put the packages together! Even if people are unable to donate, many are willing to help put everything together. We only had a few people last year but it went quite quickly once we got into a little system.

6. Deliver the packages! Depending on how your NICU is set up and the staffing, you may or may not get to actually deliver the packages to families. Last year we just dropped them off and the staff handed them out. We would have had to get permission from every family to bring them a package and it just sounded time consuming and difficult for the staff. I was happy to drop them off and let them play Santa. This year, there is a better space where we could set up outside the NICU and we are hoping to have NICU graduate families there to visit with and support current NICU families and hand out care packages. 

If you end up with extra things, make a few extra bags! The NICU kept the extra bags and just handed them out as new babies/parents came to the NICU. They also took some of the packages over the L&D for some of the moms on bedrest there, which I think is awesome.

Have fun!!

NICU Care Packages 2012

It's that time of year again!! NICU Care Packages! Last year we had this little idea to take a few care packages in to the NICU for parents spending their holidays in the hospital at UW Medical Center. While we were there for 4 months, we never spent any major holidays there. I can't imagine how hard that must be to not be able to be at home and with family. Our hope is that these care packages can bring a little bit of comfort and joy to families. We will be making 50 care packages to bring to the NICU families at UW.

 

Last year, we did "Stuff the Stockings", which I loved because stockings are one of my favorite parts of Christmas morning. However, this year I just don't see myself having the time to make a bunch of stockings. The contents of the care packages will be very much the same, but we will just be doing gift bags to simplify things a little.

This is our "wish list" of items to be included (the things that are crossed out are things we have already received):

Little lotions
Chapstick
Small/Fun Size candy
Granola Bars/Snacks/Gum
Emergen-C/Halls Vit C Drops
Small Notebooks & pens
Kleenexes

Hot Chocolate or Tea
Hand Sanitizer
Preemie Baby Hats (new, knit, crochet, or sewn in preemie sizes)
Small Blankets (new)
Sample size shampoo/conditioner
$5 Starbucks Gift cards
Pink or Blue Gift Bags
Small children's books 

Because of some very generous friends of ours, we already have enough of a few items!!! We were completely overwhelmed with the kindness of our family, friends, and strangers in helping out with this project last year. We were able to make more care packages than we had anticipated! Our wonderful friend Theresa is already working on some adorable crocheted little outfits for babies and our other friend Angie has already collected and donated some equally adorable tiny preemie outfits.

 {All of last year's donations. Amazing huh!?}

The response was so wonderful last year that in addition to the 50 care packages, we are also hoping to be able to donate a few extra packages for families in need. We are hoping to get some diapers, wipes, baby wash, and maybe some preemie outfits (new or gently used).

If you are local, let me know if you would like to donate and we can arrange to pick up/drop off any donations. If you aren't local, don't worry! We have a Wish List on Amazon, you can pick what you want to donate and have it shipped directly to us! We also have a little facebook page for the project if you are interested in keeping up with our needs and the progress. Thank you all in advance for helping out with this project. There's no way we could do it without you.

Capture Your Grief: Day 22, 23 & 24

Day 22. Place of Care/Birth The place that looked after your you whilst you were pregnant. Share a photo of those who took care of you and your baby. This could be a midwife/doula/friend/partner.

The boys were born at UW in Seattle, 2 hours away from home. I spent a few weeks there on bedrest and then it was our home for the next 4 months while Cohen was in the NICU. 


Day 23. Their Name/Their Photo If you feel comfortable, share a photo of your baby/ies/child/ren who you are remembering this month. If you do not have photos, you could use an ultrasound image or something that represents them.

The sweetest little feet you ever did see. I remember when he was born thinking how big his feet were and how long his toes were. And yet they are so itty bitty. I made one of these for Cohen for his room and I made one for Carter to put in his memory book as well.

Day 24. Siblings This could be done two ways – your could photograph your own siblings and post about how grief has affect them or you can post about your other living children. I know that not everyone has living children but I felt it was important to include the children who are left here to grieve their brothers and sisters. Capture a sibling, niece or nephew’s grief. Maybe you could share a drawing they have done or even just a photo of them holding something that represents their brother or sister that they are missing. Give them a voice here.

Cohen isn't old enough yet for us to know how all of this affects him and how it will play out in his life. We know that we are going to talk about Carter and he will always be a part of our lives. But we don't know how Cohen will choose to handle it all. I wrote a little about raising a twinless twin on a previous blog post.

Finding Purpose

I have been thinking about this for some time and I've had several other people ask me about it. How do you find purpose in all of this? How do you make something good out of something terrible?

For me, finding something that gives me a purpose and direction has been wonderful. And healing. And wonderfully healing. After Carter died, I felt a little bit like I was lost and wandering. I knew that I wanted to do something positive with everything we had been through, I just didn't know what. The death of a child is completely devastating and I knew that it was something that I could let bring me down (besides the normal grieving, I totally support the grieving process). But I didn't want it to become my life. I needed to make something more out of Carter's life. The time and energy that I never got to put into raising and loving him, I needed to put toward something else, something that mattered to me.

For me, this something to drag me out of the darkness has been diapers. Lots and lots (and lots) of diapers. Teeny Tears has donated over 10,000 diapers, and we have contributed around 1300 of those diapers. Teeny tiny diapers, and little bitty diapers in all kinds of colors and prints. It lets me do something constructive with my time. When I feel like I need some "Carter time" or I'm having a particularly rough day, I make diapers. It gives me the chance to feel what I need to feel while moving forward at the same time. I hate that there is even a need for these diapers, but my prayer for each little one is that it can bring some family somewhere even the tiniest bit of hope. And that it can help them to know that someone out there cares about them and thinks that their baby matters and is just as important as any other baby.

 {Cohen loves to help pick out the fabric}

The other cool thing that has happened is that as I work on these projects with my family and friends, they become a part of the process. They see the teeny, tiny diapers and realize that there are tiny babies that are deserving of these little diapers. And they see how many diapers we are making and they get a little glimpse of the fact that there are a lot of families that lose babies, it isn't an isolated thing. It makes me feel so loved and supported to know that I have people in my life willing to take on this project and help out. It's hard to to talk about babies dying and it can be uncomfortable. But, I have found that this makes an easy way to share and work on something together without having to just sit and stare at each other. This way, it just feels more natural and if anyone wants to talk about it, we do, if not...we make diapers. And I am so incredibly grateful for my friends who take fabric home and cut out diapers and for the people who drop off flannel donations at our local fabric store and for the store who is willing to collect the donations for us. It really is a wonderful thing.

 

 {Diapers waiting to be ironed}

The other thing we have taken on last Christmas and again this year is taking care packages to our NICU in Seattle. The diapers are for Carter and the care packages are for Cohen. Something for each of my boys. A small way to give back and to tell them that their lives are important. I want them to know that I am so thankful for each and every moment that I have and had with both of them and that we can help other parents and babies too. I remember last year aftert taking on the care packages that I kind of wondered what I had gotten myself into. I had started with the idea of just making a few and taking them to the hospital. Then I got word that we would need to be able to offer a care package to every family currently in the NICU. Makes sense, but where on earth was I going to be able to find enough things for 40 care packages in a few short months!? And then the word got out, and people started helping. And helping and helping and helping. And we ended up meeting and exceeding our goal. And it was awesome. The love and support we felt still warms my heart. People who didn't know us, or hadn't had a preemie, were willing to give of their time and resources to help out. (More details on NICU Care Packages 2012 coming soon).

{Diapers in memory of TTTS angels}

 

In the end, I feel like it is me who has gotten the most out of all of this. Through wanting to do something to make sense of our loss and to keep myself busy, I have been given great things. Love and support and new friends. I have been continually amazed at people's generosity and willingness to help. I had no idea that it would be a continual thing or that anyone would want to help out. It has been so healing for me to be able to work on these little diapers and the care packages. It has been a way for me to make sense of things. Not that Carter's death with ever really make sense, but it helps me make sense of the "what now?" part of grieving a child. What am I going to do with my sadness and my grief? For now, and probably for a long time, I will carry on with my little diapers. So here I am, trying to make sense of my life, one tiny diaper at a time.

An All Over Monday Update

Thanks for sharing your tips on the "I need sleep" post and on the "Appointments" post. Sometimes being a mom is so hard and it's nice to feel supported.

Alright, time for a little life update. It feels like we've been so busy!

 Cohen had his last day in the church nursery on Sunday for quite some time. Hopefully we will be able to beg someone to come and stay at home with him once in awhile so we can still get in to church. We tried sitting in the back of church with him and he is just way too busy and too loud.

We are setting up a time to get our family pictures taken and we are really excited.

Cohen is still active and busy as ever. He's transitioning from two naps to one (and back and forth again). He hasn't been sleeping that well at night, but I think he is just sensitive to changes in his routine and likes to know that we are still here. Sometimes a baby just needs his mom and dad, and I'm okay with it (although tired). I think he is really close to walking. He is taking steps between us and will even let go of the couch to take a few steps to one of us. He walks around with anything that he can push...chairs, tonka trucks, tupperwares, his little walker toy. He has this little game where he will pull up to stand on one of us then get one of our hands to hold onto and then put his arm out and reach for our other hand so we can walk him around the house. Again and again. Our quest to teach him baby sign language still hasn't gotten anywhere, he just doesn't seem interested. He still LOVES to eat and generally eats anything in sight. We are so thankful for this as we know there was a huge potential to develop oral aversions because he was intubated for so long and just had a lot of negative experiences with his mouth when he was so little.

 {Out for a fall walk. Love the changing seasons and this boy!}

 We've still been working on diapers. My mom just finished her first hospital donation that she did all by herself! We are having a little diaper get together soon as we now have over 600 diapers to make. We also dropped off over 100 diapers to UW when we went down for Cohen's appointment. We were able to donate these diapers in memory of a baby boy who was born and passed away there recently. His mom received a diaper for him while she was at UW and she found her way to the Teeny Tears group and is now involved in making them herself. It gives me chills.

{We got to meet up with Eli and his mom for a quick playdate}

 Somewhere in there, I made this little quilt for our friends who are having their first baby soon. I think it turned out pretty cute. I made sure to leave a few mistakes in it, like the Amish do, so that she would remember that nobody's perfect.

Other than that, it's the same ole, same ole. Mr. Stinkers still stinks, our house is still messy, Cohen is still incredibly active. Just how we like it. And when I get back into doing Fess Up Fridays, I have a lot of things to confess. And lastly, here is a video of the young master practicing his walking (and eating leftover breakfast off the floor). Happy Monday!

A Letter from Some Tired Parents - Please Help!

Dear People,

I need some advice. Cohen used to be a good sleeper. Like really good sleeper. Sleep 12-13 hours through the night kind of good. Starting a few weeks ago when he had his cold, he stopped being a good sleeper and started waking up throughout the night. Some nights he still sleeps okay but sometimes he is up 5-6 times a night crying.

We've tried letting him cry (it just gets worse), we've tried going in and giving him a quick hug and laying him back down. We've tried rocking him (he goes to sleep, but still seems restless) and then we lay him back down and he screams again. He sleeps with a fan on and he has a little night light in his room.

Last night, out of desperation, I took him into our bed with me. And he went to sleep!!! I'm totally surprised because that is the last place I ever thought he would sleep. Bedtime is serious business for Cohen. He generally doesn't want to be rocked or snuggled, when it's bedtime, it's bedtime and he wants to be in his crib. On the rare occasion that he did wake up in the past, we could snuggle him real quick and easily put him back in bed. Now, even if we snuggle or rock him he keeps crying. It's like he's awake, but he's not awake. And he seems very restless.

Now, I don't want to support his bad sleeping habits if he's just being a turkey, but I also don't want to ignore him if he needs something. I don't know if he's having bad dreams or if it's something else. Helllllllllllllllllllllllllllllllllllllllllllp. I like sleep. Really like sleep. Like Cohen used to.Thoughts? Advice? Sympathy? :)

Thank you!!
A Few Tired Parents

Capture Your Grief: Day 19 & 20

I am combining these two because they kind of go hand in hand.

Day 19. Project Have you worked on any projects inspired by your loss? They could be anything from an art project to organizing memory boxes for a hospital. If you have not yet done a project you could share something that you would like to work on.
Day 20. Charity/Organization Share your favourite charity or organization that has touched your heart on this road of grief. If you don’t have a photograph to share, just simply post the link to their website!

I bet you can guess what my project is. Yep, Teeny Tears!!  I can't even begin to explain how healing this project has been for me. In case you haven't heard about it, it's a group of volunteers all over the US (and beyond) that help out with some or all of the process of making tiny flannel diapers. The teeny diapers come in 2 sizes and fit babies 18-32 weeks. I would have loved to pick out and put a diaper on Carter. My hope in doing this project is that grieving parents feel the love of someone else who has been there. I hope they feel that their babies are valued and treasured. And I hope it provides them even the tiniest amount of hope and comfort. That is my prayer.

I have felt so loved and supported by all of our friends and family who continually help out with the diapers. There's no way I could do it without you all!!! With just our little group, we have donated 1350 diapers to various local hospitals, organizations, and NILMDTS photographers. And we have another 500+ in the works.

And my favorite charities/organizations are Teeny Tears and NILMDTS. So it all works out pretty well.

Capture Your Grief: Days 17 & 18

Eek, I keep getting a little behind on this project, but here are a few catch up days. 

Day 17. Anniversary/Birthday/Due Dates Share a photo of what you did for your baby/ies/child/rens special day. Did you hide away in bed? Did you have a cake? Did you have a party? What did you do?

 

 For the boys' first birthday, we took balloons and cupcakes to Carter's grave. I read two letters that I had written to the boys and then we let some balloons go. You can read more about it here.

Day 18. Your Family Portrait Take a photo of you with your family, work out a way to incorporate your baby/ies/child/ren who are no longer physically with you anymore. You could hold up photos of them or even just hold their names with you. What does your family look like now? Is it just you left here? Do you have a large family? Is it just you and your partner?

Sadly, this is probably our last whole "family" picture. We went to Maui in March 2011, I was almost 4 months pregnant. In a way it makes me sad to look back at these pictures. We had no idea that in 10 weeks our boys would be born.

 One of my greatest regrets has always been that we never got to get a picture of our boys together. We have pictures of us with Carter and us with Cohen, but none of our boys together. But I am so thankful for the pictures that we do have of this little part of our family.

The Appointments

Cohen had his big appointment at the high risk infant follow up clinic yesterday. It's a combination of tests to see where he's at. I have to admit, I left feeling a little discouraged. I knew we were going to be in for a long day just with the appointments, but to add in the combination of Cohen's tornado-like habits when he gets overwhelmed...oh boy. I didn't take any pictures, except one in the car, because I was trying to keep him from wreaking havoc on the place.

First up was his meeting with the psychologist. Yep, my one year old has already had his first psychological evaluation. I sat with Cohen on my lap at a little table while the psychologist sat across from us with a booklet in front of her that she was scoring Cohen on what he did and didn't do. I was supposed to sit there with him and not interact with him. So, there we sat as numerous toys came in and out of the drawer. Could he find the toy under the washcloth? Turn the pages of a book? Bang two blocks together? Put the blocks in the cup? Does he say words? Does he walk? Does he point to things when you say the word?

I have to admit, it was all a little overwhelming. I didn't anticipate responding that way, but it is what it is. Here I sat with my 16 month old miracle while he was being judged for where he was at. I know, I probably took it a little personally, but it was just so hard to sit there and watch him being scored for the things he "should" be doing. And it felt like they were focusing mostly on the things he couldn't do. Um, hello? There wasn't any guarantee that he would be sitting here today! Can't he get a million points for overcoming infections, intubations, heart problems, kidney problems, skin problems, and massive lung problems?


I had to keep reminding myself that while the psychologist seemed fairly indifferent to the whole process, I knew what Cohen had overcome. It's kind of like that day that I sat in the NICU wondering if Cohen would ever come off the ventilator. He still seemed so sick. And then one of his doctors came in and told me to think back to a week ago and a month ago and to see the progress that he had made. While the changes seemed small, each one added up to a lot of change and a lot of progress. It was easy for me to get caught up in the moment and want big, huge improvements. But, as parents of preemies know, preemies have minds of their own. I know with Cohen, he does what he wants, when he wants. In his own time. And I know that's how it's going to be with everything else too. Who cares if he doesn't bang two blocks together? We know how far he's come. Plus, what baby has an "evil plan" cackle and a fake laugh that will make anyone (besides psychologists) smile? I would give him a few extra points just for that. And for being able to open the front door and crawl out. And for being able to chase down his cat and poke his eyes.

Cohen is at an 11-13 month level (he is 13 months adjusted). His hearing is perfect and he gave two residents a run for their money when they tried to do a physical exam on him. He also entertained several doctors sitting on the other side of the double mirror that he insisted on licking (ew), banging on, and playing peekaboo with himself.

Cohen also had an appointment with his regular pediatrician earlier this week and he has broken the 20 lb mark!! He's also in the 60th percentile for height, on a non-adjusted chart!! 

All I know is that today I was reminded that I am proud of Cohen no matter what those charts say. We are so thankful to have him in our lives and we are happy with whatever he does, when he decides to do it.

The Blur

In case you were wondering why there haven't been many pictures of Cohen lately, it's not because I haven't taken any, it's because most of them look like this: (these are all from my phone so that doesn't help either). See the blurriness in all the pictures? It's because he never.stops.moving.

{This is cute even though it's blurry!}

But every once in awhile, after I take 10,000 other pictures, I will get one good one. It hasn't happened yet, but I'll let you know if it does.

Community & Waves of Light

It was both beautiful and heartbreaking to see all of the candles for little ones on facebook and blogs yesterday. So many little lives gone far too soon but so wonderful to see all the support for these babies and their families. It's nice to have them acknowledged.

Day 14. Community Our community is so amazing, but with that being said, none of us want to be a member. Share a photo of a community gathering or event that you have attended.

I have to say that my "community" outside of my family, has been found mostly online. There are some parents that are local and that I have met with, but I have come into contact with most of them because of the blog or on facebook somehow. There is an amazing community of parents out there. Parents who I am free to be myself with, whether I'm having a good day or a bad day, they get it. 


Day 15. WAVE of LIGHT Today is October 15th Pregnancy and Infant Loss Remembrance Day. Light a candle at 7pm to help create a continuous wave of light around the world for 24 hours. Photograph your light!There were people around the world lighting candles at 7 pm to create a "wave of light". Here is our candle that we lit for Carter and his friends.

Day 16. Release Balloons, lanterns, butterflies, doves.

As I have mentioned before, releasing balloons has kind of been our thing for Carter. On the 4th of July, there were some lanterns released and they were so beautiful and I would like to do that for Carter one day. Maybe on his next birthday.

And speaking of balloons, I just wanted to share this real quick. I was sitting at the computer yesterday and I looked out into our yard and saw a balloon sitting right by the stairs. I thought it was a little weird, so I asked my mom if she had dropped off a balloon. She said she had so I asked her why she left it in the back yard. Turns out she had tied it to one of the pumpkins on our front stairs. I just have this picture in my head of Carter carrying that balloon around the house and putting it in the back yard where he knew I would see it. Such a sweet boy, saying "hi" to his mom.

And lastly, we have a guest post today over at Life After NICU about finding hope in grief. Go check it out! 

Pregnancy and Infant Loss Awareness Day

Today is Pregnancy and Infant Loss Awareness Day. Today we remember all of the babies gone too soon and their families who are living without them.

For Carter and his friends Esther, Sammy, Andy, Dex, Treyton, Parker, Emma and Keaton, Ryan, and Jonathan. If you would like to add your baby(ies) names please feel free to do so in the comments or on our facebook page.

I hope today is a peaceful day to remember your little ones and to share their stories. If you would like to watch Carter's video we made him, it is here.

And to our Carter - not a day goes by that we don't think of you and miss you. We love you with all our hearts and can't wait until we get to see you again!

Capture Your Grief: Day 12- Scents and Day 13 - Signs

Day 12. Scents Do you have a scent that you relate to your baby/ies/child/ren? Is it a candle scent, perfume, food or maybe a flower? Share it with us!

These are the two scents that remind me of my pregnancy. The lotion is some I got when I was first pregnant. I used it every day while I was at home during my pregnancy.

The body wash is one that my mom brought me while I was in the hospital. I begged her to go find me something other than those little hospital bars of soap. I used it while I was in the hospital and while Cohen was in the NICU, it reminds me of being pregnant.


 Day 13. Signs If you believe in signs from your child/ren, share with us an experience you have had.

Last year at all of our family holidays, we let a balloon go for Carter. Each time we let one go, no matter where we were, they would always fly towards our house. Balloons have always been our "signs" for Carter. One day I stopped by the cemetery and I was cleaning up Carter's grave and I picked up a deflated balloon off the ground to drop off in the garbage on my way out. I put the balloon in the car and as I started to drive, it floated up to the ceiling. It stayed up the whole time I was driving, I didn't stop to throw it out. Instead, I took it all the way home with me, enjoying my time thinking of Carter. When I got home, it was still floating around so I let it go and it floated right away. It was like Carter had just stopped to say "hi" and to let me know he was okay. 

Happy Coming Home Day, Cohen!!

It has been a YEAR (Oct 13) since Cohen came home from the hospital! Can you believe it!? As with many other of our "dates" it seems like it's been longer than a year and like it was just yesterday at the same time.

We are incredibly thankful for how "healthy" Cohen has been since we brought him home. We were desperate to get him home after his due date came and went and there still didn't seem to be an end in sight. After reassuring the doctors that we could handle him at home with a feeding tube and oxygen, the ball began rolling to get him home. Within a matter of days he had taken his carseat test, we had watched videos, set up home oxygen and feeding tube supplies and we were as ready (and terrified) as we could be. And then...he had an eye exam and he was inches away from needing surgery for his ROP. It was strongly suggested that we stay until the next eye exam in case he needed surgery in which case he would have to be readmitted and blah blah. So, we heaved a deep sigh, and trudged along for almost another week.

I remember sitting in the recliner chair holding him, waiting for the doctor to come in for his eye check. I just sat staring at his little face, begging and pleading and praying that he wouldn't need surgery. I was terrified he would need the surgery which would require reintubation and add more days to his NICU stay. Of course we would have done anything he needed, but it was something we were hoping to avoid. My mom and Danny were both there and as we saw the doctor approaching we left to wait in the hallway (eye exams are no fun). The nurse popped her head back out into the hall and said "okay you can come back". I was trying to read her face but she wasn't giving us any hints. My heart dropped and I knew he was going to need the surgery. But he DIDN'T!!! I cried tears of joy knowing that we were finally, after 130 days and then some, going to get to bring Cohen home. IF you are a parent of a preemie, you know how incredibly hard it is to leave your child every night and to be away from them. Most parents worry about the first time they leave their child overnight and we had never spent a night with our baby.

Those last weeks in the NICU were pretty awful for me. I was desperate to get out and get home and be family. There were twins in the same room as Cohen and it was just draining all of my energy and emotion to get to see a mom that got to keep both of her babies. It's not right or fair, but it's just where I was. Drained and constantly reminded that while we were excited to bring Cohen home, we weren't bringing our twins home. I owed many nurses apologies for my behavior those last days but I just couldn't take any more. We really didn't sleep much the night before we left, we were just too excited and nervous and overjoyed and terrified.

And this was it, the moment had arrived. We were going HOME. We packed Cohen up in the car and said all our last goodbyes. It was bittersweet for sure, saying goodbye to the nurses who had we had grown to love and who had taken care of not only Cohen, but us as well. It felt so weird walking out the door with him. I was sure I was going to set off alarms or someone was going to think we were stealing him. For that one brief moment, we were mostly normal (besides the oxygen tank), but people might have thought we were just a normal couple taking our baby home.

{One final exam before leaving}

 When we finally got home, we dumped 5 months worth of stuff on the floor and it didn't move for probably a week. We showed Cohen around the house and then we just enjoyed being home. In our own space. The weeks taht followed were filled with numerous doctors visits, most in Seattle, oxygen drop offs, late night tube feedings, but we didn't care. We were home. And it was the best feeling in the world.

 {No more living out of bags!!!}

 {We have this picture framed, the day we walked into our house with Cohen for the very first time}

{"I think I like this home place..."

Day 11: Supportive Family/Friends

Day 11. Supportive Friends/Family Who has been there for you?

If you've been around here long, you know that we have incredibly supportive family. If I don't say that enough, shame on me. They are wonderful and amazing. We aren't perfect by any means, but we are here for each other.

My mom and sister had their bags packed for the moment I called them and told them it was time for the boys to be born. That night I made the phone call to them I was so relieved that they were coming down. I am so grateful that my mom and my sister Karen got to meet Carter. I will never, ever regret them coming down and getting to meet him. I wish our whole families had gotten to meet him, but it just wasn't realistic at the time.

 Our family has always treated Carter like a real person and has never once made me feel pressured to move on or get over it. And I appreciate that more than any words can ever express. They take flowers and balloons to his grave, they bring Christmas presents for him and remember him in their own little ways and it brings joy to my heart that he is remembered. They have helped us walk this journey and there's no way we could have done it without them. My mom stayed with me in the hospital every.single.night that Danny couldn't be there. My dad took time off after the boys were born to stay down in Seattle with us. Our family made the arrangements for Carter's burial and took care of Carter's headstone. We are so incredibly grateful for each and every one of you! (Danny's parents are a little more camera shy so we don't have many pictures of them)

 {My mom's tattoo - Carter Garen, Forever Loved}

Our friends have also been very supportive. We were the first of our close friends to have children so it was a bit of uncharted territory. A situation like this truly teaches you who your true friends are -- the ones who keep calling, and keep asking, and keep remembering. We are so thankful for our friends and our new friends we've made along the way. Thank you for laughing with us, crying with us, being silent with us, for checking on us, and for giving us grace.

We couldn't have asked for better support from our family, old friends, new friends, church family, and "strangers". This blog has also been a huge support and we are so thankful for all of our friends here as well.

Capture Your Grief: Day 8, 9, 10

I've been a little behind so I'm combining a few posts of Capture Your Grief.





Day 8. Jewelery Do you have a piece of jewelery in memory of your baby/ies/child/ren? Share it!  

I actually have 2 necklaces that were given to me by 2 different friends. I love them both so much. Such a perfect, subtle way to remember both of my boys and always keep them with me.

The round one had a pearl on it that fell off somewhere :( I have two "twin" pearls that I got in Hawaii while I was pregnant that I want to put on the necklace.

The other one was given to me by another baby loss mom. Her little girl lives right next to Carter at the cemetery.

 Day 9. Special Place This could be a place that you visit that brings you peace. Maybe it is a place that you went to when you were pregnant or where your child’s place of rest is.

My special place is Carter's grave. I don't go as often as I would like, but it's really the only place that I feel close to him.

 {The first time we took Cohen to Carter's grave}

 

 Day 10. Symbol Do you have a symbol for your baby/ies/child/ren? It could be a butterfly, dragonfly, a humming-bird, dolphin, seashell, share what it is and why it is so symbolic to you.

I don't know that I really have a symbol for Carter. Whenever we are out walking though I always see those little white butterflies and they make me think of him and I feel like he is there with us. 

Sleeplessness, Sickness, and Sensory Time

I'm in a bit of a funk. Maybe it's the fact that over the weekend Cohen didn't sleep more than 30 minutes at a time without waking up crying. All.night.long. Poor little fellow wasn't feeling good and couldn't sleep. We took him in to the doctor and other than a little cold, it didn't seem like there was anything else wrong. Finally, last night he SLEPT! I have a new sympathy for parents whose kids don't enjoy sleep as much as mine. We have been so lucky to have a baby who sleeps through the night quite easily. That's why we were so worried that something was wrong with him because he has always been a great sleeper. I will say I enjoyed my snuggle time though as Cohen is totally not a snuggly baby. When it's sleep time, it's sleep time. But we did get some cuddles during the wee hours of the night in the recliner chair.

 {I should have known something was up when he fell asleep on our walk the day before...that NEVER happens}

We spent all weekend at home, wiping snot and walking around with a baby clinging to our legs. I'm incredibly thankful that he is back to sleeping and hoping this cold goes away quickly. Welcome cold and flu season! Ugh....I was SO happy that he finally decided to sleep that I took several pictures. But don't be fooled, these were the first times that he slept in two days.

{On the way to the Drs office}

 {Exhausted}

And, in my efforts to not give my child anything but the best opportunities for learning, Cohen did some sensory activities last week. Do you ever feel like Pinterest has made you feel like a failure of a parent for not constantly doing awesome crafts and providing ever changing sensory learning opportunties for your child? I do. Anyway, I was trying to get some stuff done in the kitchen so Cohen sat in his chair and learned about different types of pasta. It was the best I could do! And by the way, this idea is totally going on pinterest :)

{Does he look smarter yet??}

 {Then we moved to flour...it bought me like half an hour!!}